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Whilst inflammatory bowel disease (IBD) is most commonly diagnosed in patients between the ages of 15–25, kids younger than five years old can also be affected. An IBD diagnosis might be tough for parents and children to face, but it’s not the end of the world. Your child can live with their condition and still enjoy most of the highs (and occasional lows) that are part and parcel of childhood.

Diagnosing IBD in kids

Most kids will experience a sore tummy from time to time. If they complain of chronic pain, discomfort, diarrhea or you notice changes in their eating and/or toilet habits, it’s best to consult your family doctor. If your doctor suspects IBD or another gastrointestinal condition, tests and a symptom history can lead to a diagnosis.

Often this stage can feel the worst for kids and parents because of the uncertainty associated with trying to match symptoms to a condition. This can be particularly complicated if the child is very young and doesn’t understand or can’t communicate how their body feels. It’s important to make your child feel comfortable and safe throughout this process. Your doctor can provide support to help explain tests your child might have to undergo to reduce their fear of the unfamiliar and unknown.

Treatment & Management

Following an IBD diagnosis, your doctor will recommend a treatment plan to help manage your child’s condition. This may involve medication, changes to diet and in serious cases surgery. Every case of IBD is unique and developing a treatment regime with your doctor may take some adjustment. It’s important to be patient with the process – it might take some time and changes before you discover what works best for your child, your family and lifestyle. As IBD cases are chronic, they require ongoing management of symptoms. Maintaining a good relationship with a family doctor you and your child trust can provide an extra level of care and support for your family.

IBD & School

If your child feels some anxiety about their condition in a school context, it may help to have a parent, school nurse or a teacher explain the basics of IBD to their schoolmates. It’s important that these explanations emphasise that IBD is not contagious and doesn’t limit their ability to play, have fun or participate at school. Sensitivity and acceptance should be encouraged – being sick isn’t embarrassing or a reason to be teased. It may be useful to draw parallels to other kinds of illnesses – kids wouldn’t laugh or blame someone who was asthmatic if they had to cough, wheeze or use a puffer.These types of explanations can nurture sensitivity towards your child’s condition. That said, like any patient, your child deserves privacy – disclosure to their classmates should be their choice. Regardless of whether their peers are in the loop it’s vital that you advise the school and teachers about your child’s condition, just as you would with any other health conditions they may have.

Combat anxiety with preparation

For kids with IBD, the prospect of ‘having an accident’ can cause severe social anxiety. Kids should be taught to expect the best but be prepared for the worst, especially at school or when visiting a friend. Putting together an emergency kit of items like wet wipes, spare clean underwear, medication and other necessities can help your child feel ready to deal with sticky situations if they arise. Be sure to let their teacher know if they take medication to school.

Support is out there

Managing your child’s illness can feel very isolating for some parents. Your friends and family may be supportive and there to talk you through tough times, but sometimes you just need someone who understands your situation first-hand. There are support groups out there who can provide just that – parents and other kids who have gone through what your family is experiencing. When you reach out you’ll find there are plenty of people in the same boat, all willing to share their advice, strength and solidarity with you. For more information, ask your doctor or get in touch with your local or national IBD advocacy and awareness group.

You can help your child understand their condition and empower them to manage their symptoms. Self-esteem is a fragile thing – when you discuss your child’s illness with them, assure them that they have nothing to feel ashamed of. An IBD diagnosis does not define them as a person, nor what they can achieve. Focus on the positives, on what they can do and encourage them to make the most of periods of good health. With support from their family and a good treatment plan they can live their life to the fullest, just like any other kid.

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